NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

I am more optimistic. Charles and I met this guy before at RSM and I gave him a pretty hard time there for saying that there has to be something doctors can offer even if the evidence is weak. This time he seemed to realise that the tide had turned and that there would actually be support for clinics like his from patients if they were honest about treating people pragmatically rather than trying to justify themselves in terms of CBT and GET trials.

There did seem to be a major shift in atmosphere from last time. It seemed that this time pretty much everyone was aware of the existence of the re-analysis study and the body of critique of PACE etc. The facilitator, who will be on the 'technical side' of the committee operations seemed very aware of everything and showed no sign of being defensive. Last time the NICE facilitator seemed a bit uncomfortable, even if he was aware that there was contention.

There is still a way to go but one or two people and things are in place that will help.

 

Hmmm... I'm feeling suspicious.

 

https://twitter.com/user/status/1000034579405819904

 

I have mixed feelings about the meeting.
There was a physio from the Bath clinic who couldn't believe the terrible experiences that youngsters have at some specialist clinics!!!
Also a liaison psychiatrist from the Maudsley Kings, who presented as reasonable, but is keen to have a psychiatrist on the Committee.

There were several vocal carers, patients and advocates who presented a more real view of ME, and current experience of ME clinics.
I felt that we got across the crushing experience of being disbelieved and doubted, the illness trivialised and the harrowing impact that this has on people in addition to the life-altering condition.

 

The chair appears to be a "neutral" paediatrician, whose usual work is very physiologically based mainly in intensive care of neoneates with respiratory problems including asthma.
He has downloade all the papers from the JHP special edition on Pace gate and also has david Tuller on his reading list. ?Open to alternative views.

 

That’s a concern.

How irritating that the liaison psychiatrist feels the need to have a psychiatrist on the committee - they really do like to cling on.

 

But will they have matching handbags and go to the loo together?

 

I very much agree with this analysis.

We are all going to be suspicious, like @Esther12, that the same psychiatrists and their therapists will continue managing people much in the same vein for the foreseeable future. However, I see no possibility of changing that without giving NICE the motivation to axe all ME services as non-cost-effective and provide nothing. These people have to be there, not just as stakeholders but as the people who are at present the justification for continuing to have any service at all. There were also infectious disease/immunology specialists present but I am not sure just how different their approaches are. What I think can be achieved is a shift in their mind set that at least leads them to question justifying what they do on the grounds of a CBT/GET centred model, or for the immunologists feel relieved that they do not have to pretend to be psychiatrists.

The whole process is going to have to be slow and move by stages and my thought was that we have managed to complete one stage. The people at NICE in charge of the guideline committee are not only fully aware of all the critique of CBT/GET but recognise its legitimacy.

The next difficult job is to prevent the guidelines slipping back to what they were before because it will be the line of least resistance for health care professionals involved in ME/CFS care. The committee has to be based on such professionals and is not going to vote for making all its members redundant. A face-saving compromise has to be found that at least sets in stone the fact that there is no reliable evidence for the value of CBT/GET.

The aspect of the meeting that for me was less good was that we are still not singing by the same hymn sheet. There was patient-led support for a 'multidisciplinary specialist team'. In my reckoning 'multidisciplinary team' epitomises the pass the buck attitude we are wanting to break down. What is needed is a service led by physicians who actually understand the scientific background and who are supported by perhaps occupational therapists and social workers to provide help with disability.

There was also a lot of support for paying less attention to evidence from trials and taking personal experience into account more - with the suggestion that different patients responded to different treatments. At the summing up our facilitator took this as the main message from stakeholders. But of course it plays directly into the hands of those wanting to keep CBT and GET on the books - the new guideline will say that these may be good for some and not others. What the guidelines should be saying is that there is no evidence for them being any good for anyone - based on formal trials. The only way to get CBT and GET removed from any actual recommendation is to say nothing is allowed unless there is solid evidence - which is the position for all other illnesses and should be the position for NHS provision.

Last time we were suspicious that the patient engagement exercise was window dressing. This time I got the impression that it is more than that. It is actually an important part of the new NICE ethos. It is seen as politically advantageous to be seen to be doing what the patients want. And for ME since nobody knows what to recommend I suspect it will provide a convenient means to give the impression that something has been achieved. If doing what the patients want means having woolly guidelines that allow some people to have this and others to have that then the CBT/GET people have won the day. The guideline will say that different people respond to different things and so CBT and GET should only be used for people who seem suitable. And the current guidelines already say that.

 

This is exactly what happened when the Norwegian guidelines were reviewed in 2015.

We ended up with a ‘specialist center’ run by the psych crowd. It did nothing at all for five years (and is up for review now) which is probably the best possible outcome. Yesterday some health official actually used this center as an example of the extra care ‘women’s diseases’ are getting which made me laugh out loud it was such a stupid thing to say.

Apparently we are now getting a full feature treatment plan with follow ups like they’ve had success with for cancer patients. They keep telling us but nothing happens, and I’m waiting to see what exactly ‘treatment‘ will consist of.

 

I think we should all try and get on the same page as @Jonathan Edwards suggests.

That means repeating over and over that there is no cure or understanding of aetiology yet so no service is better than fake service. Especially as the fake service undermines the patients basic rights to social support and medical care.

I’m interested as to what we should expect GP’s to do without a clinic to send people to ...should they not provide basic medical care and monitor progression via routine tests every couple of years and prescribe treatment and referrals for things like low thyroid etc? At least until more research reveals what truly is going on. Is there a model for other chronic conditions that we can refer to?

With nothing we have a stronger lobbying position for more biomedical research so our first objective is to ditch all treatments pretending to cure...including any supplements or antivirals etc. As well as the bps stuff.

 

The term 'multidisciplinary team' is a political buzzword introduced in the early 1980s. Before that we had lots of different professionals doing different jobs. We had nurses and OTs and physios and even 'lady almoners' who came to be known as social workers. We each did our job. Someone was in charge of medical diagnosis (doctor) and someone was in charge of care (sister) and others were in charge of other things.

What happened was that medics, particularly in peripheral hospitals, wanted to have empires. They wanted handmaidens of all sorts, partly to be important and partly so that they could fob off all the problems on to someone else. So they had the brilliant idea of the 'multidisciplinary team'. This was the point where psychologists were brought in to show that the 'whole person' was being treated. It was also the point where PAMs (professions allied to medicine) started taking over diagnostic and triage work, despite having no training in either basic physiology or scientific critique.

The system is great because there is always an answer for everything. If someone does not know what to do they just work out who else to pass the buck to. And because people like to be busy someone will oblige by claiming they know what to do.

 

Up until about 4 weeks ago I was exactly where you are in terms of adapting the clinics ....however after listening to various other perspectives I’ve moved my position. I think these would be abused (particularly in the case of children) so I’ve gome off the idea. I think all of the positive points you have raised are exactly what I would like to see...I just think the old guard needs to be fully swept away before we have any chance of rebuilding to something better.

 

This is worrying.
Is there any way to get the patient groups to agree what the main goal is here and fight for that rather than jeopardise everything ?

 

This is my view. When I started looking after rheumatoid arthritis in 1977 we were using poisonous ineffective treatments and I knew that my real job was to listen to patients, tell them what I could about their illness and keep in touch. Fifteen years later in 1992 I was still seeing some of the same patients every few months and was able to say we were beginning to get somewhere and there was little doubt the patients appreciated having a lifeline if nothing else. By 2007 we had treatments that worked for almost everyone. If the patients had been looked after by GPs nothing would have happened. I personally think the one thing people deserve when they are ill is to be listened to and advised by someone who knows as much about their illness as there is to know. In terms of quality of life the impact is huge. GPs are never going to understand ME if they see two or three patients. I personally doubt there is a useful place for health centre based practitioners in 2018 - they cannot know enough to provide a good service.